race-ethnicity-data-collection-training-ahc-report-final-2013-july

Adventist HealthCare Center on Health Disparities Collecting and Reporting Patient Demographic Data: Maryland Hospital Statewide Training Final Report to the Health Services Cost Review Commission August 2013 820 West Diamond Avenue, Suite 400, Gaithersburg, MD 20878 Executive Summary Maryland is one of the most diverse states in the nation: over 45 percent of the state’s population is non-White Health disparities—differences in the burden of disease by race, gender, age, and other cultural and socioeconomic characteristics—disproportionately affect minority, low income, and other disadvantaged groups Patient demographic data is critical for hospitals, physicians, and staff to meet patients’ specific needs and reduce disparities Although 80 percent of hospitals and other health care organizations collect patient race, only half collect ethnicity (e.g., Hispanic or non-Hispanic) or language data.1 Staff in admitting departments who register patients often guess at or “eyeball” a patient’s race or ethnicity based on their appearance or last name Standardized race and ethnicity categories and data collection methods can be used to inform quality improvement efforts, address needs of vulnerable populations, and ultimately reduce disparities The Adventist HealthCare Center on Health Disparities (the Center) and Institute for Patient- and Family-Centered Care (IPFCC), in partnership with the Maryland Health Services Cost Review Commission (HSCRC) and the Maryland Hospital Association (MHA), developed three Trainthe-Trainer sessions on the collection of patient demographic data (i.e., race, ethnicity, preferred language, and country of birth) at Maryland hospitals Training sessions were held at MHA in Elkridge (Central) on June 28th; Shore Health System, The Memorial Hospital at Easton (Eastern) on July 23rd; and Frederick Memorial Hospital in Frederick (Western) on July 26th MHA and HSCRC sent announcements to hospital systems throughout Maryland to register for the training sessions Representatives from 30 hospital systems participated in at least one of the sessions There were three training objectives: (1) discuss why disparities and data are important; (2) explain how to collect race, ethnicity, and language data; and (3) explain how to address patient concerns Participants received training materials and resources to use when training staff at their own facilities Training content included local population demographics, health disparities data, race and ethnicity categories, data collection strategies, interactive role-plays, and group discussion The IPFCC facilitator presented patient- and family-centered care concepts and led a brief discussion with patients about their personal experiences being asked for race, ethnicity and preferred language information at their hospital In addition, the Center facilitators discussed approaches and recommendations for hospitals on how to collect data, address patient concerns, and train others at their facilities Knowledge assessments (pre- and post-test) and training evaluations were administered at the training sessions as well Feedback from participants after the class and on the training evaluation indicated that most of them were satisfied with the training and the information they received Nearly everyone (98%) felt that the facilitators did either an excellent or good job of meeting all three learning objectives Many respondents showed a good baseline understanding of the concepts presented; post-test responses demonstrated increases in knowledge for many of the concepts Regenstein, M & Stickler, D (2006) Race, Ethnicity and Language of Patients: Hospital Practices Regarding Collection of Information to Address Disparities in Health Care |Page Participants raised concerns about meeting HSCRC data collection and reporting requirements and helping staff understand the importance of collecting race and ethnicity data consistently and accurately For instance, both patients and staff may not feel comfortable discussing these sensitive topics during registration Through discussions with facilitators, patient panelists, and partners at HSCRC, participants received useful information and approaches to handling concerns for staff and patients Also, examples shared during the training and practice during role plays provided opportunities for participants to consider and demonstrate strategies they could apply at their own hospitals and share with other hospital staff Hospitals that collect self-reported race, ethnicity, and language data from patients have the opportunity to use this information to improve quality of care, improve access to care, and reduce health disparities, ultimately leading to better health outcomes for all populations in Maryland |Page Project Description Background 2010 U.S Census data estimate that Maryland’s nonwhite residents are approximately 29% Black, eight percent Hispanic, and six percent Asian According to the 2005–2009 U.S Census population estimates, 20 percent of Maryland’s population speaks a language other than English at home Across the state, nearly a quarter of Black residents, 17 percent of Hispanic residents, and 10 percent of white residents lived in poverty, with incomes less than 100 percent of the Federal Poverty Level (FPL) in 2009.2 Patient demographic data is critical for hospitals and physicians to meet patients’ specific needs and reduce disparities Although 80 percent of hospitals and other health care organizations collect patient race, only half collect ethnicity (e.g., Hispanic or non-Hispanic) or language data.3 Staff in admitting departments who register patients often guess at or “eyeball” a patient’s race or ethnicity based on their appearance or last name Standardized race and ethnicity categories and data collection methods can be used to inform quality improvement efforts, address needs of vulnerable populations, and ultimately reduce disparities In addition, hospitals that have these standards in place will have an easier time conducting community needs assessments, sharing information statewide, and informing public health reports, all of which support state health reform Across the state of Maryland, efforts are underway to improve data collection and promote health equity In an (unpublished) upcoming report from the Cultural Competency Workgroup of the Maryland Health Quality and Cost Council, co-chaired by Dr Lisa Cooper (Johns Hopkins University) and Mr Marcos Pesquera (Adventist HealthCare), several recommendations are presented to address provisions outlined in the Maryland Health Improvement and Disparities Reduction Act of 2012 Collectively, the provisions strive to improve cultural and linguistic competency and promote health care equity throughout the state The training sessions described in this report are directly aligned with several of the workgroup’s recommendations, including strengthening the collection of health data by race and ethnicity and standardizing staff training on how to properly collect data to accurately capture race, ethnicity, and language Overview of Training Sessions In response to the stated need, and in response to bid number HSCRC-13-003, the Adventist HealthCare Center on Health Disparities (Center) submitted a proposal and received funding to provide race, ethnicity, and language data collection training to Maryland hospital staff The Center, in collaboration with the Institute for Patient-and Family-Centered Care (IPFCC), held three training sessions in June and July 2013 Sessions were held in Central, Eastern, and Western regions of Maryland to train staff from hospital systems on collecting race, ethnicity, and language preference data from patients and their families Training sessions were held at the Maryland Hospital Association in Elkridge (Central) on June 28th; Shore Health System, The Kaiser State Health Facts (2011) Poverty Rate by Race/Ethnicity, states (2008-2009) Available at: http://www.statehealthfacts.org/profileind.jsp?rgn=22&cat=1&ind=14 Regenstein, M & Stickler, D (2006) Race, Ethnicity and Language of Patients: Hospital Practices Regarding Collection of Information to Address Disparities in Health Care Available at: http://www.rwjf.org/files/research/RWJNPHHIreport-2-06.pdf |Page Memorial Hospital at Easton (Eastern) on July 23rd; and Frederick Memorial Hospital in Frederick (Western) on July 26th Curriculum Development The training curriculum was originally developed and used to train registrars at Montgomery County Hospitals in 2009 through the Montgomery County Hospital Care Equity Initiative (MCHCEI), a pilot program of the Engelberg Center for Health Care Reform at the Brookings Institution in collaboration with Adventist HealthCare and other Montgomery County hospitals Through this effort, local hospitals collected patient race, ethnicity, and language data in order to build their capacity to examine local health disparities, measure racial/ethnic health care equity, and enhance health care quality improvement efforts In December of 2012, the Maryland Hospital Association (MHA) hosted a session for all Maryland hospitals about Health Services Cost Review Commission (HSCRC) requirements and best practices for demographic data collection For the statewide training sessions, the Center staff took the original training material along with slides from the December 2012 meeting at MHA and edited them to include current population statistics (using Census 2010 data), inpatient discharge data, patient-centered care concepts, and HSCRC guidance for collecting race, ethnicity, language preference, and country of origin data from hospital patients Project Team The project team consists of experts from the Center and IPFCC Center on Health Disparities Mr Marcos Pesquera (Executive Director) provided guidance on the development and implementation of the overall project Dr Marilyn Lynk (Program Manager), Dr Deidre Washington (Research Associate), and Ms Emeobong Martin (Project Manager) developed the training materials, served as facilitators, managed training logistics, and prepared the final report Nadine Monforte (Research Intern) provided administrative support for the overall project including managing the registration process, developing presentation materials, printing and assembling training packets, and summarizing evaluation data The Institute for Patient- and Family-Centered Care (IPFCC) Ms Joanna Kaufman, RN, MS, a Program Specialist at IPFCC with experience in patient- and family- centered care, served as a co-facilitator at each of the three training sessions Ms Kaufman facilitated discussions with patients Kermitt Wright and Maureen Theriault, who serve as patient advisors to Anne Arundel Medical Center and Meritus Health System, respectively The idea of including patients as part of the data collection training was to raise participants’ awareness of the impact of asking questions about race/ethnicity and help make the training “authentic” by having actual patients provide feedback and suggestions |Page Partners The Center partnered with several organizations and colleagues throughout all phases of the project State of Maryland Department of Health and Mental Hygiene, Health Services Cost Review Commission (HSCRC) HSCRC staff Dianne Feeney, Associate Director, Quality Initiative; Claudine Williams, Associate Director, Policy Analysis; Elsa Haile, Chief II, Quality Initiative; and Oscar Ibarra, Chief, Information Management and Program Administration, played a valuable role in the dissemination of information for the training sessions They provided valuable input and feedback on the presentation materials (including Patient Quality Indicator data and a letter dated January 28, 2013, describing revisions to inpatient and outpatient data submission requirements), answered questions at the training sessions, and provided guidance on how to improve the training Maryland Hospital Association (MHA) In addition, the Center worked directly with Nicole Stallings, Assistant Vice President, Quality Policy and Advocacy at MHA to determine marketing and outreach approaches for recruiting participants for the training sessions MHA hosted the first training session in Central Maryland (Elkridge) with assistance and input from Ms Stallings and support with set-up and refreshments from Dorothy Patrickson, Executive Assistant, Quality Policy and Advocacy Frederick Memorial Hospital and Shore Health Systems Ms Stallings solicited participation from hospitals to host the sessions in each region With her assistance, we were able to use MHA headquarters and hospital facilities to accommodate participants traveling from across the state of Maryland Linda Porter, Patient Access Manager at Shore Health Systems, and Janet Harding, at Frederick Memorial Hospital, were our main contacts at each location We received great support from them and their colleagues in planning and delivering the sessions Marketing and Outreach MHA reached out to all Maryland hospitals to announce the training sessions and identify locations at which to hold these sessions in Central, Western, and Eastern Maryland that would be accessible to hospitals throughout the state In order to reach the most hospitals, MHA used the following approaches for outreach and marketing: • MHA’s Update Newsletter: This newsletter goes out to all c-suite executives at every Maryland hospital, every member of a policy board, and MHA’s Executive committee as well as others that have asked to receive the newsletter An announcement about the three sessions was sent to recipients every Friday from June 14 (for the June 28th session) through July 19 See Appendix A for a copy of weekly announcements • All participants of the December 7th training session were sent invitations to participate in June and again in July |Page • MHA’s Council on Clinical and Quality Issues: Members of the council were sent an announcement in June via email and received another announcement on July at an inperson meeting Other partners sent various communications to announce the upcoming training sessions HSCRC sent training information and registration announcements to case mix liaisons at hospitals, CFOs, and others included in their listservs in June The Center included an announcement in the July 12th Adventist HealthCare employee newsletter, and set up the registration page on the Center’s website In addition, leadership and staff in patient registration, information systems, and other departments at Adventist HealthCare facilities were informed of the training sessions either in person or by email The training announcement included a link to the registration site on the Center’s website with a description of the training and contact information for additional details To accommodate the more than 40 hospitals in the state, there were 90 spaces for participants to take the class (30 people per class with the expectation that each hospital might send at least two people) Race/Ethnicity Data Collection Train-the-Trainer Sessions Implementation The Center and IPFCC delivered three, 4-hour Train-the-Trainer sessions for frontline staff and other related staff on the collection of patient race, ethnicity, and preferred language data from hospital patients at admission Training sessions were scheduled on June 28th (Maryland Hospital Association), July 23rd (Memorial Hospital at Easton), and July 26th (Frederick Memorial Hospital) Two training facilitators from the Center and Joanna Kaufman were present at each training session Patients participated in a panel at two of the training sessions (one patient at MHA, two at Frederick Memorial) in which they provided comments and answered questions about their experiences being asked for their race, ethnicity, and preferred language during various hospital visits Light refreshments such as coffee/tea, water, juice, soft drinks, fruit, granola bars, pastries, and other snacks were served at each training session Frederick Memorial Hospital provided lunch for participants who attended the training on July 26th and videotaped the session Facilitation Training sessions were held in classroom-style settings with additional tables for materials and refreshments, a podium for facilitators, and audiovisual equipment for presenting the content (e.g., LCD projector and screen, and Internet connection for video presentation) The training was designed to meet the following three objectives: (1) (2) (3) Discuss why disparities and data are important Explain how to collect race, ethnicity, and language data Explain how to address patient concerns In the first section of the training, Joanna Kaufman, the facilitator from IPFCC, reviewed the four core concepts of patient- and family-centered care—respect and dignity, information sharing, participation, and collaboration—followed by a brief discussion with patients about their |Page personal experiences and reactions to being asked for their race, ethnicity and preferred language information Mr Wright and Ms Theriault explained their roles as advisors, shared some of their health history, and answered questions about their experience in the health care system (It is interesting to note that neither Mr Wright nor Ms Theriault was asked about their race or ethnicity at any of their in-patient hospital stays.) Following feedback from the first training, Ms Kaufman asked the panelists specific questions: - How you [or how you think other patients] feel about being asked about race, ethnicity, country of origin or birth, and language at the hospital? - How can these questions be asked to help address patients’ concerns or fears about sharing this information? - What advice would you give patient registrars and other staff about how to collect this information, so patients feel comfortable? - What can hospitals to help patients feel comfortable sharing race, ethnicity, and language information? During a brief question and answer period, participants asked the patients questions about ways to better collect demographic information (e.g., how to ask the race and ethnicity question appropriately) that would show cultural sensitivity when registering patients Some discussion points included understanding experiences interacting with different staff, being in the role of a caregiver and providing demographic information for a relative or friend, and requesting to be treated respectfully when registrars ask questions and address concerns One positive result of having Ms Theriault and Mr Wright at the training was that other participants shared their own experiences as patients in their own facilities or in another hospital This discussion led to an exchange of personal stories and (hopefully) encouraged participants to understand the importance of using respectful and empathetic approaches when collecting information about patients’ race and ethnicity The facilitator from the Center reviewed the shifting population demographics within the state of Maryland, using the most recent data available from the 2010 U.S Census and estimates from the American Community Survey The data emphasized regional data (Western Maryland, Central Maryland, and Eastern Shore) as appropriate Data on previously documented racial/ethnic disparities within the state were presented as well (Patient Quality Indicator data was supplied by HSCRC) Additionally, the facilitator discussed the Joint Commission’s patientcentered communication standards and recommendations for hospitals on data collection/use and patient, family, and community engagement In the second section of the training, the facilitator discussed how to collect race, ethnicity, and language data from patients, emphasizing the importance of effective collection technique and accuracy of the data collected Real-life examples were used to illustrate that using a person’s appearance and/or surname is neither an effective nor an accurate technique Here, the facilitator also reviewed different introductory statements to make before asking race, ethnicity and language questions, and highlighted evidence-based research to show which statements are the most effective and elicit the most positive responses Also in this section, the facilitator reviewed the HSCRC hospital inpatient and outpatient dataset reporting requirements on collection and reporting of demographic data elements |Page Finally, the last section of the training covered how to address some patient concerns regarding data collection These concerns may include uncertainty as to why the data are being collected, who will have access to the information and how it will be used (i.e., privacy concerns), and how to answer the questions (e.g., patients may be unfamiliar with the race classification system set forth by the U.S Office of Management and Budget) The facilitator explained how to address these concerns and provided guidance on responses or statements to avoid To encourage full group participation, the training included a series of interactive role plays One purpose of the role plays was to encourage all participants to consider how they could address some challenging situations that they may encounter (or may have already encountered), such as patients who not want to disclose their race and/or ethnicity, patients who don’t understand why race and ethnicity data are being collected, and patients who may be concerned that such information is being asked of them to determine their immigration status A separate series of role plays was designed to facilitate discussion on how to handle situations that may arise when hospital educators are training other staff (e.g., frontline/admissions staff, quality leaders, etc.) at their individual hospitals At the last two sessions, facilitators explained the purpose of the role plays, and asked the volunteers to work through two of the scenarios After allowing time to so, the facilitators asked for volunteers to demonstrate the scenarios in front of the class The facilitators and class then engaged in discussion about the scenario, including feedback for the volunteers, and alternative approaches to handling the situation Because of the large number of attendees at the first session, participants were asked to work in small teams and go over 2–3 role plays on their own before coming together to discuss their responses and feedback Measurement and Evaluation Summary Process Measures Based on pre-registration information (either provided online or obtained via telephone), a registration/sign-in sheet was created and circulated at each session to document all attendees, their respective hospitals, and job titles Participants who did not pre-register provided this information on-site Table summarizes the number of participants and hospitals at each training session (see Appendix B for additional details) Across all training sessions, there were 30 hospitals represented and 78 participants Of all participants, 45 were trainers/facilitators; 59 participants planned to train other staff at their facilities |Page Table Summary of Race, Ethnicity, and Language Data Collection Training Session Outcomes (in numbers) Date June 28 July 23 July 26 Location Registrants* Attendees* Hospitals** Trainers Maryland Hospital Association The Memorial Hospital at Easton Frederick Memorial Hospital 30 31 16 22 22 28 80 TOTAL Pre-Tests Post-Tests 18 Who plan to train 23 30 29 13 18 21 21 25 14 18 25 23 78 30 45 59 76 73 *In several instances, participants pre-registered for a training session, but did not attend However, we accepted participants who walkedin and did not pre-register **Some hospitals had representatives at more than one training (e.g., MedStar Health sent staff to two sessions) Therefore, the total number of hospitals that participated (30) is less than the number of hospitals represented at the training sessions (33) Knowledge Assessments and Training Evaluation (Pre-and Post-test) Knowledge assessments were developed to ascertain participants’ knowledge of race and ethnicity data collection approaches and requirements, and were administered at the beginning (pre-tests) and end (post-tests) of each session The knowledge assessment items on the pre-test and post-test were identical An evaluation of the training was also developed and included with the post-test In the evaluation, participants were asked to rate how effectively each of the learning objectives had been met and indicate their overall satisfaction with the training See Appendices C (pre-test) and D (post-test) for the knowledge assessment and training evaluation Summary of Training Evaluation Responses Table presents a summary of responses from all three training sessions (N=68, except where noted; of the 73 attendees who completed the post-test, five did not complete the evaluation questions) As seen in the table, most respondents said the facilitators did an ‘Excellent’ or ‘Good’ job of meeting each of the learning objectives Almost all of the respondents (97%) said they were either satisfied or very satisfied with the information they received Most said they were either definitely (79%) or very likely (19%) to use the information they learned and respondents said they felt prepared (85%) or somewhat prepared (15%) to share this information with their colleagues through teaching and/or mentoring staff (N=40; this question was not originally on the post-test, and was added for the last two sessions) For specific responses to training evaluation questions, including anticipated use of information, see Appendix E |Page 10 Appendix D Post-test (Knowledge Assessment and Training Evaluation) Maryland Hospital Staff Training Race, Ethnicity, and Language Data Collection (Post-test & Evaluation) Date: Location: July 26, 2013 Frederick Memorial Hospital (Frederick, MD) Thank you for attending today’s training session on the collection of race, ethnicity, and language preference data Please take a few moments to answer the questions below, by choosing the appropriate answer or answering the question in the space provided Please list the Hospital/Facility where you work: _ Are you a trainer/facilitator? Yes No Do you plan to deliver this training at your facility? Yes No Data Collection Approaches Which statement is best for an introduction when asking a patient’s race or ethnicity? We want to make sure that all our patients get the best care possible, regardless of their race or ethnic background I’m asking you these questions because the government says I have to This will help us hire staff to better meet your needs This will help us make sure you get the best possible care A person’s surname (last name) can be used to determine their race or ethnicity True False List at least two reasons patients may be hesitant to answer questions about their race and/or ethnicity |Page 23 _ Data Collection Requirements If a patient identifies herself as Hispanic, it is not necessary to ask her about her race also True False Which of the following reflect revised, current HSCRC categories for race data collection? Check ALL that apply Black or African-American African-American Asian or Pacific Islander Native American Biracial Two or more races Explain what is meant by “granular race/ethnicity data.” You may also give examples General Knowledge Patients and families offer valid insights into hospital practice and policies that differ from those of staff True False The principles of patient- and family-centered care are: (Select all that apply) Respect Information Sharing Collaboration Dignity Participation Partnership Listening |Page 24 _ Training Evaluation How well did we in meeting the following stated learning objectives? Explain why disparities and data are important Excellent 10 Fair Poor Explain how to collect race, ethnicity, and language data Excellent 11 Good Good Fair Poor Explain how to address patient concerns Excellent Good Fair Poor 12 How satisfied are you with the information you received today? Very satisfied Satisfied Somewhat satisfied Not very satisfied Not at all satisfied 13 How likely are you to use the information you learned today? I will definitely use the information I learned today Very likely Somewhat likely Not very likely |Page 25 14 After today’s training, how prepared you feel to share this information with your colleagues (e.g teaching and/or mentoring)? I feel very prepared I feel somewhat prepared I not feel prepared Thank you for your participation in today’s training session We are interested in hearing your feedback Please provide any additional comments or suggestions below _ _ _ _ _ _ |Page 26 Appendix E Responses to Training Evaluation |Page 27 |Page 28 Appendix F Responses to Knowledge Assessment: Multiple Choice (Three tables: June 28, July 23, July 26) 29 |Page 30 |Page 31 |Page 32 Appendix G Responses to Knowledge Assessment: Qualitative (Open-Ended) List at least two reasons patients may be hesitant to answer questions about their race and/or ethnicity June 28, 2013 REL Data Collection Training Pre-Test REL Data Collection Post-Test • Citizenship/Discrimination • Concerns about privacy, concerns about discrimination • Long wait • Where is information going? Will you discriminate? • May feel like the quality of care will be compromised, may feel like information will be shared/or used for other reasons • Fear, lack of knowledge of what data is used for • Legal status • Immigration, Government disclosure - what are you going to with information • Prejudice & lack of information • Government concerns - don't want government to know legal status, Don't know where else this information is going • Immigration status • Deportation, unfair treatment • Legal status Government knowledge of info • Afraid of discrimination Would like to know if you're trying to prove they are not a citizen • Prejudice/Fear • Fear of government, not sure what data is being used for • Fear of unfair treatment - Judgment of character • Fear, government • Privacy, uncertainty • Afraid of deportation & reporting information to the government • Afraid of prejudice, fearful they will not have same opportunity as someone else • Do not understand why we need the information, feel the questions are intrusive • Not sure why we are asking Feel it is a violation of their rights to be asked • Immigration status worries, government wants too much info • Past experience Not comfortable • Fear the information will be used against them • Feel it's an invasion of privacy Feel it will effect their treatment • Discrimination, immigration • If they are illegal Doesn't think it's the government's business to know and just don't want to give • Privacy, Why • Fear it will be used against them in a negative way • Fear of being excluded from services based on race/ethnicity, Fear or what is being done with the information • Sensitivity and discrimination issues Who will it be shared with Will healthcare decisions for format be based on it Immigration issues • Stereotypes, possibility of discrimination • Personal privacy, time • Deportation, government getting in my business • Not sure why race and/or ethnicity data is being collected, unsure why data needed for treatment/services • Concerns about usage of information by government, concerns about immigration status for country of origin • Stereotypes/Possibility of discrimination • Fear of reporting, not understanding • Afraid of deportation, none of our business • Sensitive, unsure about keeping their information private • Perceived racial profiling, feeling of distrust about usage of information gathered • Previous unpleasant experience, Fear it may affect/impact the quality of service 33 • Uncomfortable with answering; thought that this will impact care • Immigration, what's going to happen with this info • Uncomfortable for them • Immigration, mind your own business • Fear of discrimination or poor customer service • May not be as VS citizen, confidentiality • Quality of care, immigration • Privacy, fear of "government." • May feel this question will interfere with their care and care they be different • Fear/Prejudice July 23, 2013 • Immigration status • Think that their info will go to people they aren't familiar with • Feel they would receive less care or quality of care, Patients may feel insecure • Past discrimination • Undocumented, Afraid • What difference does it make? Don't want to be treated differently • Lack of knowledge, Not sure what you will with this information • Offended, Just don't want to • Profiling/singled out • Afraid they would be treated unfairly • Immigration issues, Fear government intervention • What difference does it make, screening/profiling • Invasion of privacy • Deportation & receiving lesser care • Uncertain why we are asking, What the info would be used for • Be used someway to be discriminatory, privacy - why should it matter • Privacy, Why the information is needed • Invasion of privacy, Not sure • Privacy concerns, Perception of different levels of care • Concern with reason asking, Not sure • Afraid of discrimination or further legal action • They don't want to be judged, Not educated on why it is needed • Uncomfortable with how the info will be used, Unsure how to answer the question • Lack of knowledge • Discrimination, Big brother • They perceive a difference in care provided & privacy concerns • Think they will be judged, Not enough education on it • May be unknown • What we might with the information given • Patient may feel uncomfortable, may feel that they may not be treated appropriately • Fear of not receiving care, Deportation • Their business, How/what will it be used for • None of our business, How info be used • Undocumented or in trouble with law • Uncomfortable, May think they will get poor treatment • Discrimination, Patients just may not want to answer this question • Fear of answer, unknown to patient • Fear of lack of treatment due to race • Fear of identity theft, Fear they may not get the best care based on their race • Offended, Just don’t want to • Fear of discrimination, They just don't want to answer, they feel that it isn't important for their care |Page 34 July 26, 2013 • Patient doesn't understand based on how question is asked, Patient may feel its an invasion of privacy • Privacy, What are you doing with the data • Feel its obvious; Legal reasons • Confidentiality issues - perceptions/discrimination based on providing data, Will it adversely impact the patient's care • Fear of discrimination, Don't understand the question/language • Uncomfortable, past history • Racial profiling, Concern of care • Worry about what the information will be used for Not understanding the question itself ("race" & "ethnicity" as constructs) • Fear of reporting to ICE, Fear of discrimination in treatment • Distrust, Identify as more than one race, Worry about discrimination • Discrimination factors, "none of your business" • Fear of government surveillance, Deportation fears • Afraid of deportation May not get proper care • Ins/status, It's none of your business • Denial of services, Discrimination, No insurance • Fear, Concerns • Concerned about possible discrimination bias and fears of immigration status; how will data be used? • Discrimination, Reporting to INS • Concern about profiling/discrimination, poor experience in the past • Discrimination, Immigration • Profiling fears immigration/deportation fears • Do not understand the question, Wondering what the data is used for • Worry about discrimination based on race, Due to negative experience in the past • Fear, Discrimination, Bias • History (trials that went wrong) and mistrust • INS > Deportation, Not sure what will be done with data • Discrimination; immigration status • Misunderstanding definitions, Fear, Cultural • Discrimination against • Background, Concerns about legal status • Feel embarrassed Unsure themselves • Don't understand question, Don't like how the question is asked • Invasion of privacy - Questioning if they will be treated differently • Fear of how info will be used, Concerns it will impact their care • They think it will be used to discriminate against them They not identify them selves as being one of the options given • Prejudice, Illegal citizenship • They will not receive the best care • Denial of services, it is necessary • Fear of not knowing where the info goes, Cultural barriers • Concern about legal residency; concern about how they will be treated |Page 35 Explain what is meant by "granular race/ethnicity data." You may also give examples June 28, 2013 REL Data Collection Training Pre-Test REL Data Collection Training Post-Test • Hispanic-Cuban • The term "granular" refers to more specific information about one's race (i.e Puerto Rican, Guatemalan, El Salvadorian, as opposed to just Hispanic) • Specificity • Being specific of one’s ethnic background • Thinking detailed race/ethnicity data ex Asian black or black Hispanic or Indian white or Hispanic Indian • Two or more races - Asian, black Non-Hispanic - Ethnicity White - Race Hispanic - Ethnicity • Going into more detail about what races you self-identify with Spanish-Ecuadorian-Columbian, White-Irish-Scottish • Drilling down to specific races/ethnicity to better understand patient's needs • Being "specific" of someone's familial origin For example, Hispanic is listed on/in the system Exactly "what" Hispanic region or background Is the person from? Not all Hispanic Latin people eat tacos as they are from the origin of Mexico • Specifics • Uncertain • Allowing patients to further define via options beyond just one category i.e._ ethnicity and country of origin instead of just race • Not sure • Granular is the break down, Ethnicity is the group • Unfamiliar with term • Breakdown • Is the extent to which a system is broken down into smaller parts to explain a situation • A collection of data to identify trends in a person's racial background • Self-identification by a patient of all races in their background • A more detailed description Explain what type of Hispanic • I have no idea • More specific information around a person's race/ethnicity - Asian, black, Jamaican • Hispanic/Not Hispanic • Drilling down to race, country of birth, ethnicity • Separating out race/ethnicity into categories Ex) white-race, nonHispanic-ethnicity, two or more races-black-Asian-race, Hispanicethnicity • Specific Hispanic could include Spanish, Mexican, Guatemala • What is your ethnic background Spanish German Irish • Specificity • To breakdown/more specific about your race/ethnicity • Accurate of self identifying July 23, 2013 • More specific data related to race (i.e Nigerian as opposed to just black or African American) • More specific > Breakdown of race or ethnicity • When you try to find out what country the patient's parents were born •? • Puerto Rican, Mexican • More specific categories to identify race and ethnicity • Detailed-Hispanic from Mexico and speaks Spanish • More specific • Drilling down to what country may be from • More specific • More specific classification - you can be Asian, from India so Asian-Indian • Specifics helpful to statistical tracking of health care delivery • To dig deeper than just the listed race options - Country of birth • Be more specific • More specific • Getting more specific ethnicity data • Specifically what region - (Brazil) • Additional level of detail like Country of Origin • Specific Information • Was not explained |Page 36 • Cuban • Drilling down to specific country, etc • Unk? • Ask if Hispanic Latino • Besides collecting data on race/ethnicity, this data may not reflect the _ within races For example, the broad racial category of Black/African American does not take into account whether one is American • Using Country - For instance breakdown Asia July 26, 2013 • More specific than the general category - for example, Vietnamese instead of Asian • Not familiar with this term Assume it means more granular data for analysis purposes • Biracial and knowing race involved give more informative than simply choosing one race • The race/ethnicity that the patient most closely identifies with • Have no clue • Collecting data beyond the standard OMB categories Such as Asian Indian or Jamaican instead of Just Asian/Black Good example: The difference in c-sections rates depicted in broad racial categories vs granular ethnicity • More specific details regarding race/ethnicity Global: Asian, Granular: Korean, Japanese, Indian • Get more specific data • More specific than the general category (Hispanic vs Guatemalan) • Bi-racial data • Not sure • Obtaining accurate detailed info of race, Offering more data for pt to select correctly • Not sure - data regarding the patient's race and ethnicity? • Going beyond location to specific geographical region • No idea • Identifying which country a patient was born in to help determine any cultural issues that could affect patient care • Specific data - Asian - Filipino versus just Asian • More detail • Not sure • Drill down method to gather more specific information • Do you identify yourself as Hispanic or Latino • Getting down to more specifics w/ race identification |Page 37